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Prognosis for Metastasized NET
My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until his most recent pet scan last week the shot seemed to be holding the tumors "at bay". This recent scan showed growth of the 3 large tumors in his liver to have grown and the tumors have also spread to his other lobe. His oncologist said "the next line of treatment would be a chemo pill called Afinitor but since you're not having any carcinoid symtoms that is your choice as to if you wanted to take it". Then he said, "there's nothing else we can do". I asked him about surgery on the liver "debulking" and he said "bc is in the other lobe and he's having no symtoms there's no reason for surgery" and he went on to say "the liver only needs 15% to function". After much research is clear that his once slow growing tumors have moved into a faster growing disease. I can see changes in him, that being more trios to the bathroom with diarrhea and he's more tired lately. But for the most part he still goes to work and dies his normal activities. Bc I don't feel like we're getting straight answers from his Oncologist i would like a straight answer. Understanding that whatever is said is not in stone, and generalized. I know there is no cure, I know their treatment was to try to keep the tumors from growing and spreading but we are at a crossroads now where the shot isn't working. He has heart disease, with 3 stents, middle age, overweight and works in a high stress environment. All things that don't help with his disease. From everthing I've read approx 17% make it to the 5 year mark. I need some insight as to what to expect since he doesn't want surgery or to take the chemo pill. Will he start to decline? Am I correct in what I've read in his prognosis? Is he at the advanced growth stage? I'm a person who NEEDS to know and the Oncologist saying , that's all we can do says a lot. Any advise would be helpful. Thanks.
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It took me years to come across my own course of action. And my doctors were not much help. (One PA is on board now and 100% supportive).
Ask yourself about the petscan: basically they put sugar in your body that has nuclear bodies attached. Then they see where they go, that is to say what cells eat them the most. Well the answer is, they go to the cancer cells. Why? Well you guessed it. They eat sugar. Want to keep the best odds on your side? Eliminate all sugar and all glucose making foods. That's what I did and the changes have surprised my docs. I feel better than I have in 30 Yeats. It IS NOT EASY. I am addicted to sweets. Not easy, at all. But living is better than dying. And the addiction is getting easier and easier. That's my 2 cents. I have had NET stage 4 to my liver for 5 years now. And I even got booted from some websites for even suggesting these things
From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714
More research is needed to understand the relationship between sugar in the diet and cancer. All kinds of cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't make them grow faster. Likewise, depriving cancer cells of sugar doesn't make them grow more slowly.
Positron emission tomography (PET) scans use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this is not true.
There is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers. Eating too much sugar can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.
- Sugar and cancer – what you need to know:
https://news.cancerresearchuk.org/2020/10/20/sugar-and-cancer-what-you-need-to-know/
"Here’s where the myth that sugar fuels cancer was born: if cancer cells need lots of glucose, then cutting sugar out of our diet must help stop cancer growing, and could even stop it developing in the first place. Unfortunately, it’s not that simple. All our healthy cells need glucose too, and there’s no way of telling our bodies to let healthy cells have the glucose they need, but not give it to cancer cells.
There’s no evidence that following a “sugar-free” diet lowers the risk of getting cancer, or boosts the chances of surviving if you are diagnosed."
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4 ReactionsI was diagnosed in Jan 2019 with a well-differentiated, functioning Net with a Ki-67 index of 15. It was a gastrointestinal NET that had metasticized to the liver. Multiple Tumors < 1 cm at the time.
It is viable for resection.
I started Lanreotide in Sept 2019 and slowly progressed until March 2023. The tumors had slowly, but steadily grown to where the 4 largest tumors were then between 3-4 cm ea.
I went to the Mayo Clinic for a 2nd opinion (my Oncologist said I three options (wait and check after MRI 4 months later, start Afinitor or start radiation treatment (Lu-177).
I waited 4 months and by then the tumors increased 25%, so I started chemotherapy pills ((Afinitor)in Oct 2023.
An MRI IN JAN showed no stoppage in growth, so I discontinued the Afinitor and had my first radiation treatment 1 week ago.
The most recent clinical trials all point to Lu-177 as the most successful outcome and some have recommended that Lu-177 be moved up to the 2nd treatment modality, while other trials are now in place with the “next” possible treament with radiation.
It apparently is individually dependent on the patient as to what course of action seems most appropriate
I also take Xermelo to control diarrhea and it has helped significantly (reducing episodes from 4-5+/day to approx once/day, a HUGE relief. It’s much easier to plan activities/outings/travel
Good luck on your future health decisions!
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5 ReactionsCORRECTION!
Mine is NOT viable for resection.
I’ve read that immunotherapy has only been successful in G3NETS, the most aggressive growing NETS, with minimal /moderate success., unfortunately.
Hello @hallinvestmentgroup and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your experience with NETs. You said that you went to Mayo Clinic for a second opinion. I'm wondering how they advised you.
You mentioned that you had your first radiation treatment a week ago. Do you know how many treatments you will have and how frequently they will be?
I'm glad to hear that the Xermelo is controlling the diarrhea. Are there any other symptoms that are bothersome right now?
https://prostatecancerinfolink.net/2015/03/24/will-lu-177-anti-psma-be-the-next-xofigo/#:~:text=Unlike%20Xofigo%2C%20which%20only%20attaches,range%20of%20the%20%CE%B2%2Dparticle.
I am on third injection Radium 223 for bones
I should mind my own business
However!
I have had 4 different options if there is a 5th I would get that
Since December 2019
I have had a liver resection. Took Lanreotide and ocreotide injections. 2 Bland embolizations and took Afinitor
This Monday I got really bad MRI results!
That said!!!!!
I am now going to start PRRT
Don’t read results no one has a crystal ball for how there life will end or when
Just keep moving forward stay ahead and continue to live without the heavy baggage of WHEN but with the lighter baggage of everyday something new is being developed
BELIEVE!!!
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4 ReactionsHello @sophiarose,
I'm sorry to hear that your MRI results were not what you had hoped for. I can only imagine how disappointing that was for you. Your journey with NETs has been filled with lots of different treatment modalities and I commend you for venturing out and being proactive with this disorder.
I see now that your next step will be PRRT. We have several discussion groups where this has been discussed. In case you would like to read about other members' experiences, here are some links to those discussion groups?
--Interested in Hearing People's Experiences with PRRT
https://connect.mayoclinic.org/discussion/prrt-treatment/
--My Husband Has Had His Second PRRT and Is Doing Well
https://connect.mayoclinic.org/discussion/my-husband-has-had-his-second-prrt-and-is-doing-well/
I would appreciate you posting as you proceed with PRRT. Do you have a date for your first PRRT treatment? Will you post updates as you can?
I don’t have a date yet
I am being told 3-4 weeks due to insurance and ordering the dosage
I will keep you posted
I will be on the support group Thursday as always
Thank you for your support
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